Tuesday, May 31, 2011
I am back for my evening visit now and am having an almost identical conversation with her now, as I did a few hours ago. When I walked in she informed me she had two things to tell me.
Her first was that the art therapy teacher had been to see her, and had discussed her joining the class, and saying the consultant had asked for her to be treated as a priority.
And the second was that she was now willing to use the nebuliser. I didn't mention this in the blog earlier, but it was discussed. Now that she has had a day without smoking induced coughing, she wants to use the nebuliser to help clear her chest. She has refused to use it for a week now, so that's a break through for her.
Another interesting occurrence has just taken place. After insisting all week that they are putting her to bed really late and it is affecting her sleep, she has now said they are waiting to put her to bed (8pm). She is currently outside smoking, and said that she needs to get back upstairs asap as they have been waiting to get her changed since 7pm.
Other things like this happening indicate that although she has 2 clocks, being able to follow what time it is is quite difficult for her right now.
So as I prepare to leave for the evening, I am left with a loaded mind about how she really is. Breathing poor, thought process getting worse, and stress levels going back up again. Can only hope she has a good nights sleep.
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I had quite a long weekend, going up to Derby to stay with Cadell, before heading further NW to see my aunt and see how she was doing recently. I had some interesting conversations with her as usual, as well as a deep conversation regarding arrangements for when she is gone. All was more than fair, and I'm glad we had the convo.
Right let's get to the important stuff here eh, mum.
Over the weekend I have stayed in touch with her to keep her as calm as possible, however there have still been upsets and misunderstandings on when I would visit over the period. Mis-communications and delays didn't help. This week she seems a lot better at moving about, and more coherent, which is a great improvement to see. However her worry and anxiety remains. Still saying she is not sleeping, spending time worrying about things, and stuck on a certain subject for no apparent reason.
This appears not to have been addressed with medication yet. Regardless of what mum has said previously, a conversation with a nurse last night clarifies once and for all what meds mum is on... The same meds she went in on, only difference being is an antibiotic. So no sedative pills like she has spoken of. And the long waits for her sleeping tablets also explained to me.
Needless to say it is frustrating as hell to see her trapped in this loop of stress and distress. Her current worry is, that its the TV causing her episodes, and she now refuses to watch TV in case it causes her to feel confused again. So she is actually scared to watch TV. Her words, not mine.
So I'm back here at the hospice now, sitting in the gardens with mum in the sunshine (occasional sunshine anyway), having just eaten my lunch/tea of a Subway, mmmm. Mum is her usual chatty self again, but as usual, repeating herself, and somewhat losing track of time with some stories and events. Her recollection of a man stopping us at the lift a couple of days ago, and make conversation for example. She has just told someone in the smoking area that is has JUST happened, on our way to the gardens just now. There are other things like this that she slips with. But other things she seems quite fine with.
Another development is the suggestion of doing art therapy. I originally suggested this a week ago but she rejected it. It was again raised by her doctor, who again she turned down. However, today she was visited by the woman who runs the art classes, and after a short chat mum has suddenly taken to the idea, and said she is seriously considering it, and how it would help.
Mum has seen the doctor already today, so I might not get to see them today, but I do want to have a proper sit down chat with them sometime soon. Just so I am up to speed with what their aims with treating mum are, how they see things going, and what we should expect next, coming home, staying here etc.
Meanwhile, I am left wondering about other stuff. The shared burden, and how my contribution towards the whole caring situation is perceived by others. Recently I seem to have had a few comments made to and about me that suggest I am not pulling my weight, and need to step up a bit. Not quite sure how this came about, but while people think it, I worry about why they think these thoughts. I confess, I escape regularly for a couple of days at a time. To clear my head, gather my thoughts, and do long round trips to see my aunt who is also ill. Apparently the only family member who can right now. I wonder if this is a sin to do. To dare to care?
The conversation of funerals has been brought up, how its going to go, how its being funded etc. My aunt is also discussing hers with me too, and her wishes for when she passes. So there are some deep conversations being had. Unfortunately its a little derailed right now, but I'm sure we can get it all back on track somehow. In the meantime, its time to get things formalised and make sure that everyone's wishes are respected.
Right, I guess I better leave it there for now. Thanks for reading my thoughts of the day.
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Friday, May 27, 2011
She is repeating a story to me about someone else who is poorly, and what is wrong with them. Now I'm not one for stealing someone's thunder, but I hate seeing mum being left to believe something that's not right. So I'm trying to make more sense of it for her, but its not happening.
Mum has however been making use of the pad I arranged for her, writing down thoughts and ailments to tell the doctors. She was also suspicious that I am collaborating with the doctor about things, as he dared to mention maybe doing some painting as a creative therapy. Sadly in her books its still a stupid idea, as there is no way she can use a paintbrush. Pen, yes, fag, yes, tea cup, yes, knife and fork, yes..... Paintbrush, uh-uh!
Either way, mum is somewhat calmer and less highly strung than she was this morning so that's helping her through the day somewhat. I had a nice fast pacer walk here from home this afternoon, after popping in to check on the puppies. So feel revitalised now. Head still a bit wobbly though.
Still not been able to see or speak to the doctor yet, although he was looking for me this morning after I left. So hopefully I can catch up soon. I am told a medication has changed today, so am keen to know what that is, and why it has been changed. I still want to know what she is taking in the evenings to settle and sleep.
We shall see where we go from there. I will prob come back this evening to at least speak to the nurse doing the meds to see what has changed.
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Speaking of sleeping tablets, she has been arguing since she was in the hospice last, saying that they won't give her the right ones, or that she is left begging for them. Now she says they give them too late to be of any use, and she can't sleep without them. I'm sure they could use a placebo, and she would sleep just fine. Dozing throughout the day, and dropping off in the evening. Even at home she slept well on the odd occasion she forgot her sleeping tablet. So I think this is nothing more than grasping at straws to stay in control of things.
What it all comes down to is more than likely anxiety. The GP has said this for months now, and has been trying to give her something to help with that, and finally had success the day she was admitted. So sadly that medication has never started. However they do seem to hae been using some form of stimulant or upper, as her spirit has been a lot higher over the past few days.... Until today that is.
Today, as we sit in the gardens she has just expressed that she has been feeling very up and down the last two days, feeling happy and miserable, but has not yet told the doctors. So I will see to that when we go back in.
Been back in since writing the above but the doctors were doing handover, so was unable to speak to them. But will catch them a little later.
So I shall continue what I was saying already. Mum said while outside with me that she had asked a nurse this morning if someone could take her out for a cigarette, but was told by the nurse that she could not go out until she had calmed down a bit. Which is also an indicator of her stress and anxiety levels rising again. This is where it all started earlier in the week.
She has commented how the nurses were slow putting her to bed last nightn but admits she didn't ask them to put her to bed early. Also complained that apparently the nurse this morning didn't wash her back. That they left her sitting for ages in only a nighty, so was cold. As well as a number of other complaints about the hospice staff today alone.
Could the love affair with the hospice be over, or could this be the brain tumour coming into effect again as it may have earlier in the week, causing a mood swing and irrational behaviour? Either way, I am kind of glad to see it happening while she is still there. I was worried for a while that after her sedation on the first night, her moods and anxiety would not show again, and it would go untreated. Hopefully its becoming obvious enough now to look into.
So I'm on the train to work now, typing furiously to get this all said and done before the journey is over.
I left her in a fairly good state, but a little down maybe. She just seems over grateful for little things right now, like the cans of drink I took in this morning. Let's see how I find her in a few hours when I return.
And in the meantime let's hope that the rain holds out for my journeys on foot between stations and destinations.
Have a good day. Update to follow.
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Tuesday, May 24, 2011
After I left at about 8 last night I finally had some time to relax, and reflect. As well as call the care agency to cancel them again til mum is back out. I would love to say I had a good nights sleep, but that would be a lie.
So this morning I have come to the hospice (currently sitting on a wall by a tree, see pic) and am astounded in the change in mum. She was very upset last night when they tried to put her to bed, so was eventually sedated, and from that had a good nights sleep. Strangely she seems to have woken as a new woman.
Last night she struggled with her date of birth, what year it was, and counting backwards. Today she is as I would usually expect her to be. Talkative, coherent, and a lot happier in herself. Delighted to be back in the hospice. Which leads me to a strange conclusion.
While I won't dispute that she is genuinely unwell right now, and that the illness could be having some baring on the situation, I have to acknowledge that there is something stress related there too. After being sedated last night she calmed down, and I wonder if there is something still in her system, or just being back in a stress free environment that is causing such a radical and sudden reversal of most of the issues, especially with her mind.
While she showed happiness at being back at home, I do wonder if she stresses about being a burden to me and my sister, as well as stresses about the carers coming 'harassing' her and other such goings on, are having a negative effect on her health.
The carers have been brilliant til now, so there have been no visible signs of mum stressing or being distressed about them, but from day one being back home she has been confused about who is coming when, and has gradually gotten worse.
So being back here seems to have changed a lot of that, maybe the sedative has helped too. That would also indicate that using anti depressents would have been of benefit a while ago, just like the doctor ordered. This takes me back to wonder if a home is the better place for her now.
We have just finished speaking with the social worker, and I have expressed my feelings about the stress side of things, which Marilyn feels this could also be the case. While the sedatives are still in her system she seems much calmer. However as we sat and talked, and time passed she has become a little more confused again. But nothing like yesterday. Just getting stories a little muddled, crossing facts up, and repeating stories.
So let's see what happens with the doctor today, what line they pursue. I will try and give some feedback to them about what I have seen, and hopefully we will be on the same page :)
Right, back on duty I guess.
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Monday, May 23, 2011
After an afternoon of phonecalls, confusion for everyone and some stress, we finally had a breakthrough at about 5.40.
The doctor called, as did the hospice nurse to say they had secured a bed for mum in the hospice, so mum will be somewhere safe, that can help in the next hour or so. No arguments, just a few frowns and groans, so all is well.
Now that she is not trying to do anything, and just sitting in the front room "relaxing", her frustration and aggression has calmed down somewhat, which is a relief.
So the ambulance is booked, and due by about 6.30. I will follow down there and get her settled in for the night, make sure she has everything that she needs, and a proper handover is done to the ambulance crew and the hospice staff. What to expect etc.
After that, chill the f**k out for a bit, and try and settle my mind a little. Today has put a strain on everyone involved, so everyone needs to take a deep breath (or a happy pill in my case) and recharge their batteries a little, ready for whatever comes next.
Thanks for reading todays events.
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Its now reached the point where she doesn't know what she is doing, is unsure of what is happening, and I hae had to speak to the GP and NHS Direct, while my sister spoke to the hospice.
On the GP calling back he has decided she needs to go in for care, either the hospice or Lewisham Hospital.
Her levels of confusion and distress hae reached such a point that it is now unfair on anyone to have to deal with it, let alone to leave her feeling this way. So fingers crossed we will get a call back soon to see if a placement can be arranged for her. Hoping that it will be the hospice, then we will get a true picture of how she is being with people.
After the doctor suggested a urine infection it seemed plausible, but as the afternoon has progressed, the situation has become out of control. Now it can only really be something more serious, possibly the tumour.
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The sealed dosage box was still sealed for Mon AM, and looking at the meds in the cup it was clear they were PM meds. However mum point blank refused to accept that she was wrong. I removed the meds, broke the seal on the AM meds and put them in the cup. As the carer left a little later she called me to say mum had still not taken her tablets so I said I would keep an eye.
The second the door closed as the carer left, mum called. I went in and she told me she was sure the meds were wrong, and that she took all these last night. I reminded her that she had just watched me replace all the meds, which she was not sure she had seen at all, but still insisted these are the wrong tablets.
Throughout the carers visit a number of conversations were ended abruptly with mum saying "oh don't confuse me". In my mind the whole matter has gone from a slight concern to keep an eye on, to quite a serious worry now.
With mum having made herself something to eat in the kitchen too in the past few days, the thought of her being left alone in this confused state, where she is breaking her word of not moving about too much, I am now left worried about what will happen if she is left even for a short period.
I have spoken with the hospice and the GP's office this morning to arrange some attention for mum asap. The home nurse from the hospice tried to arrange a visit but it sadly clashed with the visit to the GP, which at this stage takes priority for me. He is more able to assess and take action.
Since she has been out for a ciggy the confusion has continued. She has just this second called me in to say I have incorrectly medicated her, and given her a sleeping tablet, as she is feeling woozy. I have checked and double checked the meds from last night and the sleeping tablet is definatly there in the bin, and was NOT administered this morning. However she remains convinced that she is feeling its effects. At the moment she is outside, showing occasional signs of distress, talking to herself about how she "can't do it".
I'm very confused myself now, so will cut this entry short and see what I can do to try and make things better for her.
Who knows what lays ahead.
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Sunday, May 22, 2011
Explaining over and over that there are no more carers, she is yet to grasp that there are only 3 carers a day, plus my sister at lunch time.
Until yesterday this was not too much of a big deal, just a repeated conversation each evening, which is simple enough. Asking when she can take her meds, what time she can sleep, and what time the last carer will call. All easy.
However yesterday that all changed.
The carers changed around a bit as it was the weekend, which might have started the ball rolling. The evening carer did the morning visit, and the afternoon carer did the afternoon and evening visits.
For some reason during a conversation with Fatima (usual afternoon carer) mum believes she asked if she could come to mum later. This may have been prompted by mum commenting that she was early, to which the carer would have responded "did you want me to come back later". Either way mum assumed the carer was coming back late at night.
To add to the confusion, mum then thought there was another carer coming so waited up. At about midnight she pressed her buzzer, and Chantal went to see what was up. Mum has re-written this to be Fatima letting herself in at midnight, and is now furious that she did this. Subsequently she complained to the morning carer this morning, which was reported to head office.
From there on the story spirals into such a tangled web of confusion, I dare not start typing it all, in the fear of being institutionalised. The end result is mum not understanding the explanation of the carers timetable. I have marked the clock and written a key to what times people are expected, but on showing her it, she could not work it out, let alone understand what order it went in.
There is also a problem with her hearing things. Insisting the doorbell is constantly ringing. Which its not.
Add all this together, and add in her inability to complete a sentence, forgetting mid-flow what she was talking about. Not remembering that she saw someone half an hour ago, repeating her stories over and over, and all other such things, and now it becomes a serious concern.
Her train of thought is truly derailed, so help is required. I will speak to the GP tomorrow and we shall have to go from there.
Today has been a very testing day... I need a holiday. Magaluf anyone?
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Thursday, May 19, 2011
So I'm writing this as I sit on the train to work. Yes, work. My first official day going in to do anything in any way functional. Plan is to get my DfT training up to scratch so I can move around the building unmonitored, and start to learn my job again. Hell its been so long since I last used a PC I don't even know if I can still touch type. I can on a Blackberry!
I feel strangely relaxed today, far less nervous than I expected. Guess the ice-breaker last week worked for me better than I expected. The big challenges are to get into work on time, and then start to make sense of what I have to do. And of course unpack. Get my desk all sorted out, taking everything out of the crate it was all stuffed into when they moved locations.
So yes, there you go, all very exciting I know. While I'm away my sister will do mums lunch visit and meds, and her boyfriend is going to look at finishing off the door that you can clearly see I botched together lol.
See you in a few hours, when I will report on how "work" went.
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Wednesday, May 18, 2011
With the coaching and prompting from the start, and the encouragement and support throughout from my favourite BBM ladies, I have to admit that its been ok today.
From the offset, with the carer arriving it was not all as negative as I expected. A friendly face on the doorstep as the first carer visit was a relief. That allowed me a little However, as I write this, I am a little disappointed with myself for losing track of time. The evening carer has just rung the bell, and I was forced to leave the comfort of my bath to open the door, damnit!
I digress. So, yes, the start of the day was pretty positive and gave me time and motivation to get on with other matters. Writing a to-do list for myself over breakfast I realised I had a few unpopular things to do before I could consider the day a success. Spurred on by motivational name calling from Cadell I soon made the 2 main calls that I had been putting off. Dear Whyte and Co.... Don't state in your letters that payments are an option IF THEY ARE NOT!!! Twats! Oh and why are automated payment phonelines so damned annoying?
So, on to the less stressful but equally important things to do (some of which are still outstanding), next on my list was the door for the hallway. Buying that will make the house safe for unmonitored visitors, such as carers and district nurses. So off to Homebase to get a door, and what a nightmare was. If you think the piles of £2 t-shirts in Primark are a mess, you should see how disorganised the doors are in Homebase! But I got one! And have since fitted it, kinda! If its not fitted properly I should hear a scream soon, as its the only thing keeping the dogs away from the carer while I'm in the bath lol.
After spending half the day trying to explain the purpose of the door to my sister, and trying to get her to understand the new routine, with mum just using the bedroom and kitchen for all her needs while the carers are here, I think I have finally gotten through to her. She has all she needs in 2 rooms, so she can have unsupervised carer visits. Meaning I can go to work, Linkline can respond to the emergency pendant in safety, as can all other responders.
I also managed to reschedule the lunchtime carer to a bit later in the afternoon. Mum now has Fatima, a third carer to call in on her. When she arrived mum was reluctant to even give her a chance, "can't understand her" she ranted. So with fire in my belly I told mum to get off her arse, and go into the kitchen to see Fatima was ok, and to show her what she likes and how she likes it. Twenty minutes later Fatima left with a smile, and mum said "I like her, she is nice"
Also today I called the district nurse to arrange a different mattress for mum. Night 2 at home and mum still sleeping in a chair.
Right my fingers are dying and my grip fading, so before my Blackberry gets a wash, I will sign off. Thanks for reading, and remember to come back tomorrow for "Tales of the office, first day back."
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The reality is, once I have the hallway door up, (will have to be done today), then I can leave the dogs in the hallway, and mum and the carer will have all they need in the front of the house. This means the carers can come and go as they please, and I won't be tied down by the times they visit. Which also means I get a little freedom back.
Its hard to try and explain to people how my mind has worked with all this. Seems a bit pathetic to say I am stuck at home, but because of the visits, appointments and mums occasional fragile state, its hard to commit to getting away without worrying constantly.
So here we are, carer is here, thankfully its one mum is familiar with, so things are off to a good start. Also today I have to speak to the agency about the afternoon carer coming later in the day. 3-4pm would be good as it spreads out the visits, and allows my sister to come at lunch time when she has less on her plate.
Got a whole load of other "me" stuff to take care of, the list seems trivial but endless (to my mind anyway) so I need to knuckle down and get that all sorted out too. As well as buying and fitting this hallway door (missions!!) Then just to check the damn thing will hold the dogs back properly. My DIY skills leave a lot to be desired, so wish me luck with that.
Right, I better crack on, first things first, breakfast and paperwork.
Catch ya later
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Tuesday, May 17, 2011
The past few nights I have not got much sleep, waking throughout the night in slight panic, then struggling to settle again.
Looking back over entries of a year ago I am remembering the stress I was going through, the worries about mum being home, and struggling with appointments and caring for her.
Over the last week the hospice have been discussing with us what sort of care package she needs once back at home. She was annoyed with the regular 2 visits a day, so when they said they wanted 4 in place for when I'm at work, she flipped. The discussion has wavered from care homes to coming home. And the circumstances under which she can come home. Finally agreeing to try 4 a day, giving me peace of mind while at work, we decided she could come home. Only to hear from my sister the next day that she and mum had agreed with the hospice that there would only be 3 visits a day. Apparently my sister has agreed that she will visit regularly during the day while I'm at work, so she won't be alone. Let's see eh!
Then there is work. In previous meetings with them we had agreed a careful steady phased return to work. My worry was always that as soon as I stepped through the door, it would all be rushed and I would be back to full hours very quickly. After reassurances this would NOT happen, you can imagine my surprise when the first suggestion was up to full hours in 3 weeks time! So this is going to be interesting trying to get that all worked out and slowed down.
Not to mention the pissy and frosty reception I got from my colleagues when I first walked in the office.
Its all new to me, new location, new office, new PC, updated systems etc. So its a whole lot to take on board. Add that to mum coming home, the worries about her being home alone, and arranging the other bits, and suddenly the skies are darkening!
Maybe I should go to the doctors now and get some stronger medication lol. Maybe I am building this all up in my head, and its all going to be fine. Who knows. Only one way to find out I guess!
I really do wish that the 4 carers had been left in place. Just so there was an independent care package, with me and my sister being extras or bonus carers. But this isn't to be the case, so no point in dwelling on it eh.
So with all this hanging over me, I'm trying to have my last "morning of freedom", so I can try and deal with tomorrow as it comes. But as the time is ticking by I'm wondering if working tomorrow is going to work or not. No carers will have been installed by the time I go to work, no full day will have been had at home with mum before she is left. That would leave my sister, who doesn't live with us, to install the carers, and leave me in the dark to know what has been requested, agreed, and arranged.
Aaaah who knows what eh, we shall find out, watch this space!
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Wednesday, May 11, 2011
It was strange being back there, everything so quiet. Ground settling, just a few people about tending to families graves. A true sense of peace for Graeme at last. Not lonely at all though, just peaceful. Myself and Rachel had a good chat, with her the grave to blame Graeme from time to time lol, was just like old times.
But then reality hit for a bit, and the truth of the matter struck us both for a bit. Gone forever, taken away from us too soon. Suddenly life takes a whole new meaning, and living for tomorrow seems like such a waste of time. Today is the day, embrace it! Own it!
The one nice thing is, knowing where he was laid to rest means I will forever more have somewhere to go for a chat when I need to blow off steam, or just want to be close for a bit.
Today reminds me of just one thing. Life is too short to worry about petty things. Have fun, make a splash, create memories, and left nothing unsaid.
Short and sweet today I know, but then the best things in life are eh :)
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Tuesday, May 10, 2011
For the first time properly in my life I am sitting in the benefits office, trying to sort out getting some help with the rent while I'm on half pay. Ok so the tide is turning, and soon I should be earning again, but in the meantime, any help with the rent and council tax would be gratefully accepted. But will it be that easy?
I was told because of previous info given, all I need bring is my last 2 months payslips so they can work our an average to base any benefits on. But something tells me that its not going to be that simple. Something will be missing, wrong or needed in order for average joe me to dare to claim anything, surely.
The offices are all newly refurbished here, and very nice indeed, with their hard metal chairs which numb your arse in seconds, and full of people speaking all sorts of languages who will probably be far more successful with their claims today than I. (I say in jest. I'm not prejudice, honest).
So while I sit here, bored senseless, I thought I would add something to my blog, to pass the time, and share another experience of mine. One I hope never to repeat, and that none of you have to either. I don't mind being part of a system, and if all works out as simply as I hope, then I will change my views. But last time I came with mum, we queued for an hour to get £2.86 a week in help with the council tax, wowza!
While I sit here, my time being sucked away, my mum is waiting, no doubt impatiently at the hospice for her post-lunch fag break. Hopefully I will get there in the next hour, or I will be in for a rough ride for sure. Its a lovely day out there, and I have already spent a couple of hours in the sun having a panini and coffee with Tracy, talking thru the woes of our terrible lives lol. So I am looking forwards to an ice-cream and a drink in the sun with mum this afternoon.
I have however used 3 of the minutes waiting wisely. Calling work to arrange going in on Thursday to start the long road back to work. The hope is to not rush things too far ahead of what I can see coming. With mum not knowing where she is going next, I need to plan for that in my return to work. Fingers crossed they will be as accommodating as discussed at our last meeting.
Right, I suppose I better listen out for my number being called, and get my refusal/rejection over with asap lol. I will comment on this entry in a bit when I get an answer.
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Monday, May 9, 2011
So as I sit in the doctors surgery, waiting to see my GP about my "mental state" shall we say, I thought I would take a few minutes to pause and start putting thumbs to keys (2011 version of pen to paper). So let's find a suitable starting point, somewhere after my last entry.
Mortality, how about that for somewhere to start. On the 5th May I was reminded of the meaning of mortality, as were many others, as we gathered for the funeral of Graeme Breen. At 28 years old he was far to young to pass away, but he fought a hard and nobel battle against anything thrown his was. Illnesses and all other kinds of adversity, he ploughed right through it all, and all with a smile on his face when anyone looked on. I hae lost many people in my seemingly short life, but Graeme stands for so much, and will continue to do so too. I think everyone left the burial that day feeling empty, but with a clear understanding that life can be over in a flash.
Then you have my mum, who seems to defy the odds over and over. Once given a year, she is now almost 3 and a half years into her fight against cancer, as well as her fight against anyone who tries to help her too. Well you know what I mean.
Since going into the hospice she has travelled down a twisty country road, taking turn after turn. Changing direction in health as well as opinions of certain things, especially treatment and care.
At the moment her stomach is working well so she is comfortable eating and drinking, which she has not been for quite some time. She is being well looked after at the hospice and getting into a routine of visitors, ciggy breaks, and eating properly.
There have however been arguments and standoffs over medication, with her insisting they keep cutting her medication, and making her beg for her sleeping tablets etc. She won't accept that medication can change colour, and some meds are replaced to have better effecr. As has been proven with her bowel medication. But overall things with her are good while at the hospice. I have said before and will say again now, St Christophers is an amazing place filled with amazing people. Staff, volunteers and patients.
Mum has now spoken to her sister Joan, and her life long friend Pam on the phone briefly, getting them up to speed on how the place is like a hotel. She enjoys the food, and the banter with the staff. There have been downs too, with her constant refusal to try different things like massage therapies, and other sorts of complimentary treatments, as well as not wanting to use the common room / lounge as a change of scenery, which would be good exercise for her as well as getting out for free air more.
Speaking of exercise, that's another area she is still persistent in not doing as she is told. Advised by the physio to take short walks regularly to work on her strength and coordination. Naturally instead of regular and short, she has occasional bursts of energy so goes for "long" strolls, wears herself out, then falls against walls like she did yesterday. Doh! No telling some people is there!
So that's mum, doing ok, and looking for her way out of here.
The undecided parts are when she will leave here, and where she will go to next. The doctors are checking for funding for home care or care home, whichever she prefers, but I'm pretty sure that's already agreed by the PCT anyway. Then there is where she goes. In my mind, the way she is now, not needing constant care, but irregular and occasional care, her best bet is the local (very nice) care home where she can summons help when needed, and is purpose built for her requirements. However home is still an option if the situation is right. Its really a battle in my mind, not wanting to deny mum coming home, but also not wanting her to be in a compromising situation with regards to her safety and well being. I guess all I can do is go with the opinions of the professionals and adapt to their recommendations. I also must really visit the care home to see what its like.
Speaking of mum coming home, before I was aware there was talk of this I was at the doctors surgery (this morning when I started writing this entry). I discussed the situation with me, where mum was and how I felt, and we got onto talking about a phased return to work. Comforted by his control of the situation, and in the knowledge of how work want to also introduce this phased return, I have provisionally agreed to try it. So I emailed work this morning to say I finally have the green light to try and return. I am still on meds, but all controlled, so I'm hoping that getting back will get me back to a structured way of life. Obviously as soon as I had finished talking and agreeing to this, I was informed by my sister that they are talking about sending mum home next week. While not set in stone, its taking some deep breaths not to panic and shy away from the return to work.
So much more is going on around me too. I feel more awake and aware of other peoples plights and situations, and want to help where and when I can. Whilst at the same time, I seem to shy away from things I need to address and deal with in my own life. Recently falling folly to a bill payment, letting the date pass, which has since been referred to the courts (oh crap), and not paying much attention to bank balances and finances, which just leaves you hanging at each turn. But today I am regaining control of these matters, and taking leaps towards getting it all under control again. Emails and phone calls dealt with this morning. I won't dwell on me and those things for now though.
Oh, drawing, yes I have discovered I can draw, well kinda. Putting pen to paper the other evening to start sketching a design for a tribute tattoo for Graeme, I shocked myself at how good it is. So I have something to focus on there for now :).
Right that's it from me for now, its all dragging on a bit, and I'm sitting in the sun in the gardens of the hospice with mum, so should pay her some attention I guess.
Thanks for reading, I won't leave it so long next time.
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Monday, May 2, 2011
Let's be positive shall we. The praise of the wonderful selfless work that the staff and volunteers here do. The grounds kept in amazing condition, the wards so clean and how any member of staff will take care of any problem put to them, regardless of if its their job or not. Having spoken to and dealt with a large number of them, I have to agree. They truly are amazing people with so much heart time and patience for anything and everything. Thank you all.
Then there is the food, again brilliant food, but over recent days, while I have seen no decline in it, she feels that its not very nice, and various other reasons and excuses to allow her to refuse or leave food. Signs of dehydration are creeping in, which I'm sure will eventually end up being tackled with a drip, but in the meantime she is demonstrating to others that she can be fussy at times, and her own worst enemy. The reasoning for this refusal, constipation. Forgive me for dropping that like that, but its her current favourite reason for everything. Weakness, sickness, discomfort and refusal to eat all comes down to the same thing, even though she has forgotten that she has told be about going to the loo. Oops!
Then there is medication. Naturally they are getting it all wrong, giving her things she doesn't need, or giving them at the wrong time and making her ill from it. Or the other one is giving her things that are doing nothing. Even though she can't remember what most of the drugs do, or how they actually work, she criticises them all the same. Yes I know she is elderly and its her right to complain, but when she gets to the point of refusing them, that's more of a problem. Her main focus on this is again the constipation, and how the meds are not working, when quite clearly they are. Because she has suppositories and a medicine, she suggests that the medicine is pointless as its the supps that are doing all the work.
The confusion is the big one that's starting to worry me a bit more now. Last week there was a hint of confusion really starting to creep in. And on admission here she was offended and bored by the questioning they gave her in a general reasoning test. Seeing if she could identify what day it was, and other general things. Now she said she was irritated and didn't have the energy to think about these things, but in truth she could not answer the questions. Having newspapers daily should be a clue to the day of the week, but she can't remember.
But it doesn't end there. Yesterday I showed her the work I have had done on my foot tattoo. I have been having it for about 8-9 months now, but she appeared to have NO recollection of ever having seen the tattoo ever before. Then this morning she was telling me about a questionnaire she had to fill out for the hospice about her symptoms. As she spoke about it it became obvious that she wasn't sure how she should have filled it out, nor what it was for, so she just wrote stuff on it. I have of course highlighted this to the staff here.
As she spoke about it, she either lost interest in what she was saying, or lost direction of thought, so just stopped saying what she was saying and started something else.
There are so many frustrations seeing her like this, and trying to stay silent about them, which is doing her no good at all. So I am trying to get the truth out of her, help her understand what is going on, and at the same time feeding back to the staff my worries, so they can act on them. She said today that last night she had REALLY bad pins and needles in both arms. She had not told anyone, but instead mentioned it later on to a nurse once it had passed. When she was explaining the story to me, she didn't understand what the big deal was, and even though it was a borderline painfull sensation, she didn't feel it warranted pressing the nurse call buzzer. They however disagree and insist that she does next time.
Also when telling me this she referred to not being sure what she should and should not tell people, my answer was simple... ANYTHING! Feel something weird, press the buzzer! She then went on to say she had told loads of people before about her hands going numb, but that had never bothered anyone. However I'm pretty sure I have not heard that one before. I do know that all doctors and paramedics have always asked about pins and needles, to which she has always said no, until now anyway.
So I'm left wondering what other ailments and pains she has that she doesn't feel are worth mentioning. And how the hell we will get it all out of her. The hospice are here to help control her pain and condition, but without knowing the truth, how can they :(.
Right, I better get on with things now, but thought I would log todays visit.
Thanks for reading.
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